Caring for carers

Is there more that can be done to support family members caring for a loved one with dementia? Research at the Caring Futures Institute is contributing to the World Health Organization’s iSupport for Dementia, an online learning program providing support for family carers.

There are a lot of questions for a family carer of a person living with dementia. And a lot to learn. “Sometimes it’s in the middle of the night when the questions come to you,” Gillian explained, “You wonder how quickly everything will change and on the particularly bad nights doubt enters your mind and you wonder ‘Can I do this?’” 

Gillian has heard a lot of questions in her 25 years as an aged care worker and providing support for carers at Resthaven. She asked some of them herself when she became a carer for her elderly neighbour five years ago. 

Seventy-five per cent of people living with dementia in Australia are looked after by informal carers – their husbands or wives, children, friends or neighbours. Caring for someone with dementia is both intimate and complex. It’s not just about providing the best possible support for someone they care for but is intertwined with grief and loss, anxiety around the unknown and a deeply personal sense of responsibility.  

One of the things most often overlooked is carers’ own self-care. 

“Carers don’t always think of the care they might need too,” Gillian said, “We don’t take what we need because we think we’re the ones doing the caring.” Respite services, like those Gillian coordinates at Resthaven, provide formal care of a person with dementia for a few hours through to an overnight away, providing carers with a short break and the opportunity to take time to rest and come back refreshed.

It is also an opportunity for carers to reach out to someone like Gillian and ask some of the questions on their mind. They appreciate knowing she’s been in a similar situation. Gillian is always happy to answer their questions but knows they need support after they’ve gone home too. Which was why she was interested in trialling and providing input for the Australian adaptation of the World Health Organization’s iSupport for Dementia online learning program for carers, led by Professor Lily Xiao at the Caring Futures Institute.

Image above: Aged care professional Gillian in the 'Reminiscence Room' at a Resthaven Aged Care cottage in Adelaide.